OFF TOPIC: Discussion on Hidradenitis

I've mentioned this before in my blog posts but I also have a skin condition called Hidradenitis Suppurativa or HS for short.  The disease is actually fairly common but some people don't know they have it and some are too afraid to come out about it because it's not a pretty disease.  Let's answer some questions regarding what this exactly is, who it affects, and most importantly how to manage it.  Please don't rely or substitute any information in this blog as medical advice.  This is just what I've done, what I've learned and now what I'm doing to help my quality of life.

*All of this information can also be found on the HS foundation's webpage.  Visit http://www.hs-foundation.org to learn more.  Or at http://www.dermnetnz.org/acne/hidradenitis-suppurativa.html.  


What is Hidradenitis Suppurativa (HS)?
It is an inflammatory skin disease that causes painful and chronically recurring, deep-seated follicular nodules, abscesses, scarring, sinus tracts and discharge.  It is caused by weak and poorly formed sweat glands that instead of releasing sweat, clog and burst underneath the skin causing the before mentioned issues.  The HS foundation quotes only 1% of the population is affected but new research is showing as many as 1 in 300 people are affected.  

The areas of the body that are usually diseased are the under arms (in my case - but just my left), groin, buttocks and under the breast.  It's a disease that doesn't go away but can be managed appropriately with the right care and prevention.  Patients can present with a single affected area or multiple affected areas, and in very extreme cases it can spread to larger areas of the skin.


Who does HS affect mostly?
Women are affected by HS three times as often as men.  Smoking and obesity exacerbate the issue.  HS mostly occurs between 20-40 years of age and coincides with a post-pubertal rise in androgen levels.  It is rarely seen before puberty and after menopause.


How can you manage HS?
Well, my disease is rated Hurley State II (see http://en.wikipedia.org/wiki/Hidradenitis_suppurativa for more info).  There are three stages.  So I will give a breakdown of what I've learned and done and you can take it for what it is.  Hopefully it will help you too!!!

*FIRST AND FOREMOST:  this disease is not caused by the patient or their hygiene.  Previous doctors had told patients they were not clean enough and thats what caused or made it worse.  This is not true but the following are things you can do to help.
*Make sure you have a doctor who is experienced with the disease.  You can find a specialist near you on the HS foundations website, that's where I found mine and she is awesome.  If you are looking for a doctor in New Hampshire look up Lynette Margesson out of Manchester.
*Take Vitamin C daily!
*You can take birth control, suppressive antibiotics, Iron, and drugs like accutane to help control it. (NONE OF THESE THINGS ARE PREGNANCY SAFE SO IT WOULD BE AFTER BABY!!!!! - IF YOUR ON THAT ROAD OF COURSE)
*Wash with antibacterial, non scented soap - I use Safeguard. Don't use antiperspirants or even deodorant if its under your arms!  For my unaffected underarm I use Speed Stick Regular Deodorant for men...why? because it's antiperspirant free!
*I wash the affected areas with 10% Benzoyl Peroxide acne face wash daily. It's the strongest I can find. And I also apply a 10% acne cream everyday.
*Wear loose fitting cotton clothing. Any friction will make it worse because with the disease we have is caused by ineffective and poorly formed sweat glands that clog and burst. With friction your just helping it along.
*Avoid dairy like the plague. Dairy feeds the disease. You can still have eggs.
*Paleo diet is great for us. (Carbs, refined sugar and gluten are also bad for this disease.) Avoid anything that has additives/hormones in it.
*Don't shave the area. I use a feminine hygiene clippers and cut the hair short but not against the skin.
*If you have a flare up and yours drain on their own, to help the process along, you can soak in a hot bath. When I have flare ups I wear a dressing with a little gauze with medical tape over it. I use silk tape because it irritates my skin less.
*I've heard eating Tumeric helps.
*Don't try to squeeze or pop affected areas, you'll just make it worse!

*Don't smoke.

*Avoid excessive sweating for obvious reasons.  Swimming is a great exercise for HS patients.

*If your overweight (like me) or obese try swimming and diet changes like Paleo.  Losing a few pounds can help you manage the disease better.

Well, I hope this was helpful for those of you who have this horrible disease.  Please get the help you need.  Also, this can be very emotionally exhausting and daunting.  Please make sure you are healthy mentally as well dealing with this.  I can now talk about it more openly, as I realize this disease is out of my control.  I can only do so much and I didn't cause this - you didn't either.  Unfortunately my next steps include surgery for scar tissue and sinus tract removal under my left arm.  But with that and some lifestyle changes I'm looking pretty good for the next 20 years until menopause kicks in :).  If you have any questions or just need some help please feel free to email me at ashlieghlevesque@gmail.com.  I'm more than happy to help on this and infertility or multiple losses.  God Bless.